Friday, May 13, 2011

For the therapists, from the mom

It's been over 2 years since we started therapies. We are lucky to have a spectacular team of therapists who love Maya dearly, and I consider to be surrogate family members. But we went through a few others before we had our perfect team, and before I forget what the beginning was like, I thought that I should write this stuff down. So, here are my thoughts for the therapists, from the beginning.

Come on in, stranger.

Welcome to my shambles.

My sweet, beautiful, wonderful child has just been through a series of evaluations specifically designed to figure out exactly where she doesn’t quite measure up. Then I got to read about her shortcomings (quantified . . . lovely. How lucky are the parents who never get to know their child’s percentile ranking on their worst skills). I sat before a scary official who’s primary goal is to keep costs low, and I fought to get as much therapy as possible . . . I have no idea what you all will do, but figured that “more” = “better”.

And here you are.

And I can’t help but slightly resent you (Just scheduling this initial meeting was challenging enough. I don’t want this for my kid. I want to be at the park, or the zoo. Not here.) and have all of my hopes pinned on you at the same time.

Please help her.

Please help me to help her.

We’re going to spend the next few years together, for better or worse. So let me share a few thoughts right up front----

First, the basics. Timeliness. You might be of the mind that 5-10 minutes late isn’t really “late”, it’s basically on time. I am not of that mind. Here’s why. I will always have my child ready for you 5 minutes early . . . so, if you are 10 minutes late we will have spent the last 15 minutes waiting around talking about your arrival. Also realize that we have 2 other appointments today . . . I knew that we had exactly 35 minutes between our last session and your arrival, which was, sadly, not enough time to get to the playground, so instead we had to settle for a quick snack and a walk around the block. Had I known we would actually have 10 extra minutes, we would have had time for the playground. I could have talked to neighborhood mom friends, and she could have played like an average kid. But here we are, sitting in the living room and watching the clock tick and getting more sad and frustrated with each passing minute that we could have been doing anything-other-than-waiting-for-you.

If, for whatever reason, you are running late, please let me know. If you are supposed to arrive at 3:30, texting me at 3:33 is not letting me know. It’s better than nothing, but only slightly.

And for the love of all that is good, if you arrive late you better be staying late. I don’t care if you have another appointment right after us. If you arrive 5 minutes late and leave on time, I will question your devotion to my child and think that you are just trying to pass the time.

Next, involve me. You have the therapeutic knowledge, and I have the knowledge of my kid. Let’s work together. If you ask me “Hey, are you open to taping her hands? Here’s why I think it would be a good idea . . . what do you think?” I will be open-minded and work with you. If you tell me “I’m going to tape her hands”, I will feel bossed around. Remember, we currently have 5 therapists, and each of you has your own agenda (and don’t even get me started on the doctors). Please let me be the mom and make decisions for my child, even if sometimes we don’t see eye to eye. If you let me be involved in the plan, I will be much more likely to go along with your ideas, because I will trust you.

Thirdly, I will ask a lot of questions. I will learn to watch my child and make mental notes, and hit you with a list of questions. (“Why does she move her tongue like that?” “How can I get her to unclench her thumb?” “ Is there a way to position my hands to help her balance better?”) I will not expect you to know every answer, but I would greatly appreciate it if you could help me find them. A simple “Hmm. Let me talk to my colleague and get back to you on that. We’ll figure something out.” will make me indebted you---you listened to me, admitted that you’re unsure, and committed to trying to learn more about how to help my kid. I will love you for this.

Finally, above all other things . . . please love my child. Or at least pretend that you do. I am scared for her, and I feel like we’re alone. I worry about if people will understand her, or put in the effort necessary to do so. I worry about whether people on the street will look at her differently. I worry about whether she’ll have friends.

You, therapists, are her first friends. She’ll learn to expect one of you when the doorbell rings, and (hopefully) she’ll get excited when she realizes that you’re here.

You’re the first people that she gets introduced to, and I’m nervously hoping that you’ll offer her smiles and hugs and encouragement.

If you love her, her days aren’t filled with “sessions”, they’re filled with “playdates”. She will have fun and learn and grow, and I will be eternally grateful that a) you are helping her and b) she is none the wiser. I want to think “she’s so lucky to have all of these great therapists coming to shower her with attention!” and not “poor kid, never gets to play with other kids because all we get to do is therapy.”

Wow, I feel the exact same way! When my son was getting home visits from early intervention, his PT would always be late, and never cal ahead of time to let me know! My son is now 3 and is in preschool and also has outpatient therapy (only PT at this point, we are on a waiting list for OT and Speech). We are always there on time or early and so far his new PT is wonderful!! She hugs my son and tells him how wonderful he's doing. She talks to me like a mom!!!

Dana, I like it! From my perspective as a therapist and a mom - it is all i would ever want and or expect from a therapist and as a mom. It is also how I would hope to treat a family I was working with. Your thoughts, requests, etc are great! Lisa

Wow Dana.....This really hit home for me today. My daughter is about to transition to CSE...kindergarten. I never thought we would get there...nor did the doctors...but we are going to try it...with a lot of support. When we had our pre-IEP meeting, her physical therapist told me she doesn't need to show regression to get summer school because she has more than a 33% delay in her gross motor skills...33% huh? That hit me so hard.....I just wasn't expecting it. People always think of that as her area of strength.....So, thank you for posting those notes to the therapists...I also worked with a great EI team....and we have a great team this year....not so much last year. Praying that the kindergarten team will be strong too.....

Dana--this post is something every professional working with kids needs to see. You have a wonderful gift of not only advocating for your sweet Maya, but also advocating for other children through your blog. Thank you! Allie

LOVE THIS!!! Oh how I wish I had read this 4 years ago, this would have prevented a lot of anger and sleepless nights. It is a post that is worth sharing with therapists. We also have gone through many but now I feel good about our current team.

I hope you don't mind, but I shared your "Amsterdam International" on my facebook page for the mommies that I know. I am a pediatric PT working in Early Intervention and would love to share this with my collegues as well. Your writing is so true, raw, and heartfelt. Your honesty is inspiring. Your daughter is beautiful and lucky to have such a great mommy!

I just found your blog from a post on Baby Center. I LOVE this! You so wonderfully put into words, what I couldn't. We're supposed to advocate for our kids, but it's not easy. I appreciate that you stick up for both your daughter and yourself in a way that's very respectful.

Well now here I am with tears in my eyes, too. I feel like you looked in my head and wrote down what you saw. My son has Duchenne Muscular Dystrophy and I worry about the looks from strangers, the future friendships - will there be many - but I know his therapists love him. No doubt. And it's such a blessing.

Dana you write from your heart and mind that captures the person reading this and pulls them in with every word, every sentence. I love your honesty. It's genuine, rich and poignant! A real learning experience for all!

It is incredibly hard to accept strangers in your home and allow them to "inspect" your child/family. Your daughter is lucky to have you! You seem very involved in her care, and therapies. I think sometimes the therapists are not so lucky to encounter a family like yours. The title of your blog "uncommon sense" is perfect because it is very easy to fall out of good habits, when you encounter families that do not follow through with care plans, and could care less if you are there, or if they themselves stand the therapists up. Families like yours are sometimes the minority in this line of work. If only there were more like you!

Thank you so much for sharing this. I am halfway done with my masters in speech-language pathology and one of my classmates shared this on a page we have for our group. Thank you so much for telling us what parents except, this is what our teachers are always drilling into our heads.